Otley Boy Gets Vital Drugs for Longer

A drugs company has reinstated funding for the drug helping 6 year old Sam Brown from Otley, who suffers from Morquio Syndrome, according to Greg Mulholland.

34 people in England are taking part in a clinical trial of Vimizim.

Greg Mulholland, Lib Dem MP for Leeds North West has been campaigning to fight for funding for the drug with the #FundOurDrugsNOW campaign.

Funding for the drug will be provided until The National Institute for Health and Care Excellence (NICE) publishes guidance on whether it is approved in the UK.

Mulholland said: ““I am delighted that Sam Brown will be able to access the Vimizim drug once again, this will come as a huge relief for his parents Katy and Simon. What we now need a positive decision in October to end the distressing turmoil many families have been going through.

“Most of those with the condition were never on the clinical trial and their conditions will continue to worsen until NICE makes a decision. BioMarin have done their part, and I would urge NICE and NHS England to approve a drug that clearly works and is approved in other countries.”

The MPS Society, the charity supporting those with Morquio Syndrome and their families, has received numerous reports of clinical deterioration of Morquio patients since supply was stopped on 25th June 2015.